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need support/advice

my bf has lupus. we are both early 30's. I'm female. he was diagnosed a year ago. I know he is living differently, can't drink, doesn't want to be social and can't stay out late, needs to be in bed at a reasonable hour...
I am starting to feel the effects of seeing someone with lupus, i guess. I am very social. I want to be out. I don't drink much and don't care to but would love for us to be able to be out and about more.
Is this realistic? can I say this to him w/o upsetting or offending him? He seems to be in a phase of depression because he is sick of being sick. I don't know what to make of my feelings. I feel guilty. Any men who could offer advice??

Hi LB :lol:
One of the most common features of Lupus is the fatigue..a debilitating fatigue. It is also the most misunderstood feature to friends, families and loved ones of the lupus patient. Almost 90% of lupus patients experience fatigue, making it one of the most common symptoms. These symptoms may vary from severe, fleeting or persistent and can form a vicious circle. When a lupus patient is tired, he does not feel like exercising. But, here is the catch 22, if we don't exercise then often we become tired and lethargic! It is important to ensure a balance between exercise and rest - exercise and rest intermittently as the body allows. He is listening to his body, it will tell him when it is time to rest. Increasing stamina allows us to gain more strength and muscle tone. Remember that rest is also needed for us to restore energy.
It is not uncommon to find that he is unable to participate in his normal pattern of daily activities, such as working, or participating in social activities. The exact cause of this fatigue is not known and there is no cure for it - only lifestyle changes to make sure that he gets restorative rest.
Since he is newly diagnosed, he may indeed be suffering from some depressions (whose symptom is also fatigue) and his fatigue may be exacerbated by the depression.
I would say to you that, before you talk to him about doing more, you learn as much as you can about the disease, its symptoms, the fatigue, the depression etc. It will be of great help to him to have a loved one who is informed about his illness and can, therefore, be supportive. Especially since he is going to have to make a lot of lifestyle changes!! Once you've armed yourself with knowledge, you may not feel the need to discuss his inabilities with him .
Best of Luck :lol:
Saysusie

An understandable, but potentially pain-inducing decision

Hi LB. I completely understand and sympathise with your dilemma. I was, sadly, abandoned by all my friends, one after the next, because they couldn't cope with what was happening to me. But before you leave your sick boyfriend, follow Susie's advise and learn about Lupus, try to find out exactly how sick your lover is, and then, with all that info, try to genuinely assess your own ability to stand by someone who will not be able to do all that he could when you initially got together.

If he cannot go out, talk together about your own need to do so, and find out together if he can allow you to do those things he can't with your friends, instead of with him. Can you make up for that by finding fun ways to stay indoors? I bought a TV and VCR for the first time when I got sick, after years of refusing to even acknowledge the existence of either, but this made it possible for my daughter and me to still have dinner (delivered) and a movie without leaving the house. Are there games you enjoy, or puzzles? I don't know how old you are, and how much you love this man, but if you do indeed love him and don't want to just give up on the relationship, you'll have to think, together, of interesting things to do at home, while still living your own life as freely as you can. Chances are he's too tired to feel jealous of your more active life, and as long as you've come to some understanding that this isn't about "cheating" on him, just going out with friends (and if it's not that, you absolutely need to talk frankly), then I can't imagine him wanting to tie you to his bedpost to force you to watch him sleep! Can you have fun without a boyfriend at your side? This is definitely easier as you get older, but perhaps you have enough good friends that it won't matter.

Your boyfriend is probably feeling robbed of his life--depressed and scared, too. While not a fan of the analyst Freud, he certainly hit one nail on the head when he said "Love and a useful occupation are necessary for happiness." That's pretty close to the quote, if not exact, and as we lose our usefulness, we beg not to lose love, too. Our biggest fear as we get sick and less capable of living "normally" is that we'll be left by our loved-ones. For both your sakes, start by evaluating how much you love him, then try to get creative with ways to be together without sacrificing your own freedom. If you don't, and just run away, you may regret losing the love he gives you because you acted too quickly. You'll both lose love, and that would break two hearts, not just one.

Sometimes we have to dig deep to find our ability to love in the face of unpleasantness, but there was a time when to abandon a sick loved-one would have been unthinkable, and in most cultures, this is still the case. But in those cultures, everyone around pitches in--the proverbial 'villiage' that is also required to rear a child. And I remember how I became a Healer. I was 10, and though my feelings for my mother were incredibly confusing and ambivalent (for reasons I needn't go into, but you can make a rough guess), when she had to have debilitating back surgery and was laid out in agony, requiring constant attention, I had to lay hot towels on her back in order to minimize the spasms she was wracked by. I remember so clearly burning my hands on these great, heavy towels, and how furious I was at having to stay home from school to nurse her, but then, as I laid the first towel on her back and felt her whole body relax, I realized that by this simple act I had eased her pain; I felt filled with love and gratitude that I'd been given the opportunity to experience this incredibly powerful moment of spiritual awakening, and from then on I took care of her with the sort of love I hadn't even known existed--again I was 10 and not a big fan of the person I was serving. But I have not stopped since then--I went on to become a life-long traditional Healer, and my passion to be one stemmed from that moment.

Now, I don't assert that you'll experience a similar epiphany, nor discover that your life's path is that of a Healer, but if you stand by him, you may find previously unknown capactities for loving within you. (I am not a Christian--I'm Native American and my spiritual life is in that tradition--I tell you this because Christians often say the sort of thing I have just said, in the tradition of preaching rather than sharing an experience and then merely allowing you to consider it without having an investment in your response. We say such things just to offer you the idea of a possibility--what you do with it is entirely up to you. Now that I've made that clear, please don't feel put down, all Christians on site--I've just don't want to be misunderstood myself--when people feel preached to, they often turn off. Of course, I support all those whose spirituality is primary in their lives, whatever its tradition.) Also, if you do stick with him and are well-educated about Lupus, you may be able to help by recognizing symptoms that he is too overwhelmed by to discern as part of the disease. You could also advocate for him with the doctors, who are often impatient with those Lupus symptoms that are so ephemeral that sometimes no one believes you're actually experiencing them. Or you can help when he's too sick to get himself to the hospital or doctor's office without help. If you choose not to take this on, perhaps you can choose a friend or family member to keep an eye on him. There are plenty of non-doctor Lupus sites which allow you to print out much detail for everyone to learn from.

Don't worry about offending him--there's nothing you can do or say that would be worse than "good-bye"; just be sensitive as you talk with as much honesty you can muster, inviting him to do the same. If your choice is to leave him, try to know ahead of time whether you want to still be his friend--a true one, not a fair-weather one--and if he's not too sad to take you up on that, at least you'll be one person he can count on. He'll need that, as his other friends are quite likely to just disappear without feeling your qualms of conscience or caring enough about him to really try to remain his friend under this new set of circumstances.

Good luck to both of you, and may I make the final suggestion of referring him to this or another site for support? Isolation is potentially the most fatal of all our symptoms, and I don't use that word lightly. I am currently trying to dig myself out of an isolation so complete that I can barely converse anymore. It is all too easy to fade away when you're ill. If you care about this man, at least try to help him avoid that before you leave him. But if you have to do so, don't feel guilty. Just be honest with yourself and don't sugercoat your own decision. Of course it's a "selfish" one, but some "selfish" acts are necessary for survival. And remember that sooner or later we all need that extra bit of caring from someone--none of us is immune from disease or disability. Part of your problem is that this society is not set up to support either him, the sick person, nor you, the lover who wants to do the best thing for both of you.

There may be support services available from the County or City you and he live in. Look for resources, discounts on things like electric bills, housekeeping and cooking help, and transportation specifically for the ill/disabled.

Again, good luck, and be strong. I admire you for your honesty in posting this here, where you could easily have been ignored or attacked by offended sick people. You obviously have guts, enough to try to make the situation better for him, whether you stay or not.

P.S. I just noticed that you're in San Francisco; I'm just across the Bay, so email me if you want to talk.

Thanks so much...

This all means so much... so much to respond to but I guess I'll start with I do love him and intend to stay, I have realized that that is what I want and now I just need to figure out 'how' this is going to work so that we're both as happy as we can be. After all, I didn't choose to be with him bc he can run marathons or stay up all night - it's the deeper more unseen things that tie us together.
I asked on the lupus foundation site for some local support and still haven't heard - not very impressive.
Busy monday morning but I would love to chat more..
Thanks again..
talk soon
LB

Bay Area support

Some practical help. Find out whether or not he, as disabled, is eligible for In-home Support Services. This is a state/county program where he can hire someone to cook, shop, clean, etc., for him. It's part of our Medi-Cal program, so try the County pages under Social Services. If you're doing those things for him, and don't live with him, you could even become his provider and get paid for it.

San Francisco has a good Meals on Wheels program, and there's another delivery of cooked food program I can't remember the name of right now, but MoW will know. One comes in the morning, one in the evening. Both are hot, sort of airplane food-ish, but better than the nothing I used to be able to cook for myself.

Also, call all his utility companies to find out if any of them give medical discounts. He'll need a note from his doctor to verify his need if, in fact, they do give such discounts.

If you can help him to get some financial relief, some household help, and some decent food, that may relieve the stress level somewhat, and will make him feel less dependent. Call the Center for Independent Living (in Berkeley if there's no S.F. listing) for more ideas.

I never got any help from the local Lupus Foundation either--my call generated a request for a donation, which I sent back with an outraged note, as I'd called them as clearly a patient, not a person in a position to donate, though I'd have done so if I could. I'm not sure what they do--research I guess--but not support. The last I knew, the only local support group met in Palo Alto at Stanford. There may be something in San Francisco, or perhaps you can start one. Of course, he'd be just about the only male in the room!

It was nice to hear you'd decided to stay. That makes me happy for him as well as for you. But it's not easy and you'll need support too, so keep your own friendships strong--don't neglect them just because he seems to need you. You won't be any good to him if you start builiding up resentment.

I've got to log off--my hands are killing me. Again, feel free to email me if you want to talk privately. Give him my best, and keep some for yourself.

Thans Awi.

.. I am so grateful that my love does not at this time require the home services you suggested. He is lucky (?!) enough to have a very mild case of SLE - he can work, shop, etc. However, the services you mention I will hold on to the information without a doubt. Thanks again.

Yeah, I have to stay with him. Well, no let me rephrase that. Nobody has to do anything, but I want to stay - I'm in love totally in love. We both really agree in general that a couple doing their own things is very important. So, I can use his downtime for my own time, and that works for everyone. Although, there are unexpected downtimes, and I am realizing that sponteneous downtime is par for the course, and I am becoming better prepared to have to amuse myself for any amount of time at any given moment. If it's part of who he is because of this, then you adjust. And my true friends will also learn to adjust - our friends - as plans can change in an instant and that's that.

I am so grateful for this man. Mushy mushmush. Cant' help it.
So happy I found this site as well because well nobody really gets it - as I'm sure you all well know around here.

LB, you have already gotten great advice here. The other thing I would suggest is to go to the website: www.butyoudontlooksick.com and read the spoon theory. It really helps people who don't have lupus have some understanding of what having the disease is like. I gave a copy to my husband, my family and close friends. Take care.

Hi Lb,
one coping strategy I have learnt is to push myself to go out and do what I want but plan the next day to be a "day off". I don't allow Lupus to stop me having a life but I have to pay for my fun. Since retiring my life has improved I give my energys to my family and my hobbies and when I feel bad I can rest. He will learn to understand his body and listen to what its telling him.Don't fight the need to rest but pace yourself and get some enjoyment too.
Love Val

Hi Awi:
No, I do not think that Hippie Mom was telling her to go away. I think she was giving her additional information that will probably help her and letting her know that she had gotten good advice that she could not add to except to refer her to the web site about the spoon theory :lol:
Am I right Hippie Mom??